Hearing the news that your child is likely to die young is devastating. It’s an incredibly distressing and confusing time. For tens of thousands of families in the UK this is the reality.

Families often tell us that they can’t find the information they need about help and support available locally. They can feel alone and isolated, and may have to fight to get vital care and support. We want to address this and have developed a range of resources to support you and to help you get the most of your local services and enjoy your time together as a family.